Re: -(HELP!)Infantile Spasms/ Sabril

[Guest guest]

Dear Christy

I am sorry, I do not recall your son's background. Is he on the ketogenic diet?

For how long? How successful has it been in controlling seizures for him? Has

there been any weaning of AEDs since he has been on the diet? Generally, the

AEDs begin to be weaned when the diet begins to do its work, as they are more

potent to the child's system when he is in ketosis.

Share his history, and maybe folks will have ideas. Thanks, .

CHRISTY VELA christysebas@...> wrote:

,

Keppra did not work on him....well it does control him physically ...but

he still having them. I can tell through his eyes. I spoke to the doctor on

Monday....he is referring him to the Blue Bird Hospital in Houston, TX. I don't

know what else to do....I do not want him on the ACTH shots because of all the

possible risk factors.

-Christy

HEATHER JACKSON jackson6542@...> wrote:Christy:

Others we've tried for myoclonics

depakote, keppra, lamictal, acth injections,(this one is the only one that

worked - he was 26 days seizure free) clonopin, zonegram, b6,

(HELP!)Infantile Spasms/ Sabril

>

> My baby is at the max of dosage on Sabril, also taking a large amount of

Pheonobarbital, and he is also taking vitamin B12; unfortunately, he still

continues to have a lot of siezures. Now he is getting them at night, not

that he never has, but they were not noticable. They hit him hard and he

cries every time he has one. He is having about 50 spasm attacks in one

day, everyday, and they usually happen all at once!

>

>

> He has been on Valproic Acid, but that didn't work.

>

>

> Please, someone help.....it hurts to see him go through this.....I just

want them to stop!

> (God, Help HIM)

>

> -Christy

>

>

>

>

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[Guest guest]

Yes, , I did get your e-mails....I just read them all. I will keep you

posted.

Thank you,

Christy

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